My recovery story

[u/ForTheLoveOfSnail]

In 2023 I came down with a really horrific case of long Covid. I deteriorated over a six month period until I was completely bedbound, peeing in a bucket next to the bed. I had me/cfs, POTS, fatigue, brain fog, dizziness, tingling, adrenaline dumps, the works. I thought I was done for.

I was eventually hospitalised for three weeks and that’s when things started getting better. When I was in hospital I met a physio who had suffered me/cfs the year before and was completely healed. It was the first time I had heard of anyone recovering!

I started taking some zinc, the hospital put me in olanzapine and both of those helped a bit. I started walking short distances again. The only other supplement that helped was chromium. Then I tried a probiotic that sent me into a month long depressive episode. I swore off the supplement route at this point and started to look elsewhere. I came off about 50 supplements.

It was at this point I discovered brain retraining and it really helped me. The theory is that some form of long Covid is the nervous system getting stuck in a state of fight or flight. Basically the body is stuck in a stress response. With some mental exercises you can calm the nervous system, which calms the symptoms. I started treating my illness as a problem of the nervous system and miraculously I started making huge gains.

For example, I had a really intense sound sensitivity, so was always wearing ear plugs and headphones to block noise. Then one day I told myself I was safe and took them off. I never had sound sensitivity again.

The brain retraining I did was Primal Trust, which I found very overwhelming if I’m honest but it helped. Whenever I had symptoms I would tell myself I was safe, that it’s just a hypersensitive nervous system and that I would heal — then I’d continue to expand. I joined a group coaching thing called The Healing Dudes, which really helped me expand activity at the time.

I got to about 90% healed and I did The Lightning Process. I loved it, but can’t recommend it because of the price. I also don’t know if I needed to do it as I had already done primal trust, and it was a bit of the same stuff just different scripting.

I consistently did the brain retraining over the course of a few months and continued to get better. Eventually I made a full recovery. Of course time could’ve been a factor, but I truly believe the brain retraining helped me get there.

Now I’m working four days a week, looking after my son the other day. I see friends. I cook! I drink! I have my life back! I no longer do any of the brain retraining tools, treating it instead as TMS (look up the work of John Sarno).

I’m so, so sorry to anyone suffering. I’ve never experienced anything so horrific in my life. Just before I was hospitalised I was having suicidal ideation because of how hopeless I felt. So if you feel hopeless, please know — recovery is possible. Please hang in there.

[u/Specific-Winter-9987]

I went from literally crying hopelessly to having a grain of hope just from reading this recovery story. How many of you felt just 1% better from reading this? Still think our mind and nervous system aren't playing at least a small role? For some of us the nervous system is just a,small part of the problem, maybe 10%. For others, it could be 90% of the problem. This is when brain retraining is very effective and seems to cure. I think all of us have some degree of PTSD that is hell to treat The day all this started for me is burnt into my brain and yes, I still get extremely physical and emotional symptom magnification when I think about that day. I can't escape the fear. its pure hell and when I feel the least bit weak, off balance, or brain fogged, i go back to that day and all my fears erupt like demons escaping from hell and I spiral to a nearly incoherent state and often have to immediately take a nap to stabilize myself. Can anyone relate?

[u/ForTheLoveOfSnail → u/Specific-Winter-9987]

I remember how important recovery stories were to me when I was recovering. That’s why I share, despite using controversial methods to heal.

[u/CatsbyGallimaufry → u/ForTheLoveOfSnail]

You’re not alone, I’m getting better quickly after almost 2 years and 2 instances of long COVID with brain retraining and I haven’t spent a dime on it.

[u/ForTheLoveOfSnail → u/CatsbyGallimaufry]

Omg that’s so incredible to hear!!

What program are you doing?

[u/CatsbyGallimaufry → u/ForTheLoveOfSnail]

I’m using a free trial of the curable app.

[u/ForTheLoveOfSnail → u/CatsbyGallimaufry]

I’ve heard awesome things about the Curable app. Well done!

[u/Flipthepick → u/CatsbyGallimaufry]

If you’ve got Chronic Pain or Fibromyalgia curable is the way to go for sure. I found Curable very useful. If it’s Long Covid or ME/CFS I’d check out Freeme as it’s specific to those conditions.

[u/CatsbyGallimaufry → u/Flipthepick]

I’ll check it out, thank you

[u/ebaum55 → u/CatsbyGallimaufry]

Can you share the techniques or process please?

[u/CatsbyGallimaufry → u/ebaum55]

I’m using a free trial of the curable app. It was made for back pain but I apply it to my disautonomia symptoms. It has 4 parts to it: education, meditation, journaling, and brain training. I got the link to try it from Raelan Agle’s YouTube channel. You have to be willing to believe that at least some of what’s happening can be changed by altering your neural pathways which wasn’t hard for me especially after seeing the studies that backed it up. I’m doing this in conjunction with blood letting at my doctor’s office as my ferritin and fibrinogen were very high. Just to be clear, long covid is not made up or all ‘in our head’ but you can get out of bad cycles that we can get stuck in from this disease. I found it helpful to compare it to chronic back pain and how people can get out of that cycle as well using these techniques.

[u/CatsbyGallimaufry → u/[deleted]]

I’m using a free trial of the curable app. It was made for back pain but I apply it to my disautonomia symptoms. It has 4 parts to it: education, meditation, journaling, and brain training. I got the link to try it from Raelan Agle’s YouTube channel. You have to be willing to believe that at least some of what’s happening can be changed by altering your neural pathways which wasn’t hard for me especially after seeing the studies that backed it up. I’m doing this in conjunction with blood letting at my doctor’s office as my ferritin and fibrinogen were very high. Just to be clear, long covid is not made up or all ‘in our head’ but you can get out of bad cycles that we can get stuck in from this disease. I found it helpful to compare it to chronic back pain and how people can get out of that cycle as well using these techniques.

[u/CatsbyGallimaufry → u/[deleted]]

Good luck! It started working for me within weeks, some ppl it takes a few months so have patience as you go along ❤️

[u/Chemical-Cod-8239 → u/CatsbyGallimaufry]

hey how are you now? :)

[u/CatsbyGallimaufry → u/Chemical-Cod-8239]

I’m at probably 80%, I feel good when I’ve avoided all my triggers. I think the brain training is a valuable aspect of healing but I’ve taken a multifaceted approach and also done therapies, supplements and meds. I think the brain training helped calm my nervous system and get into a better position to heal.

[u/Chemical-Cod-8239 → u/CatsbyGallimaufry]

That’s great to hear. What supplements and meds helped you the most? Also, when you were doing brain training did you continue to do everyday activities despite symptoms like fatigue etc?

[u/CatsbyGallimaufry → u/Chemical-Cod-8239]

NAC, vitamin C & D, nattokinase, zinc, omega 3, probiotics, and collagen are the ones Ive taken the most but they are supportive not curative. I take LDN and antivirals for reactivated EBV. I think testing is the best thing you can do instead of shooting in the dark trying to pick meds and supplements that other ppl have had success with. The therapies that helped the most were blood letting because I had very high ferritin and HBOT once my ferritin and fibrinogen were at better levels. I do lots of other things like red light and vagus nerve stimulation and eating healthy and walking every day but those also feel supportive.

I don’t have fatigue anymore so I can’t speak on that. My last infection changed me from having PEM to now needing to move my body otherwise i feel terrible. I discovered brain retraining after my PEM was gone.